Doctor and Patient Medicine in the Age of Twitter
By PAULINE W. CHEN, M.D. The New York Times June 11, 2009
I blog, I tweet and I use Facebook. And as I recently told a medical colleague, social media has been an enormously useful tool in my work.
"I can barely keep up with e-mail," he snorted back. "I'm not about to open up that black box."
About 15 years ago, during my residency and just as the first blogs were starting up, I took care of a patient in his mid-40s whom I'll call Eddie. In a waiting room filled with elderly patients crippled by vascular disease, Eddie looked out of place. Until you looked closer at his fingers and toes. Parts of them had been amputated.
Eddie suffered from Buerger's disease, or thromboangiitis obliterans, an illness that causes clotting and inflammation of the blood vessels of the hands and feet. Considered an "orphan" disease because of its relative rarity, Buerger's disease compromises the blood supply to a patient's fingers and toes. Eventually these patients, who are usually men in their 20s to 40s who smoke, develop excruciating pain, severe ulcerations and gangrene. And more often than not, they must undergo progressively higher amputations.
There is no cure for Buerger's disease; the only way to slow the process is to quit smoking. Therein lies the tragedy. For unknown reasons, patients who suffer from Buerger's disease are profoundly addicted to tobacco, far more so than most smokers. It is nearly impossible for them to quit.
Eddie wanted desperately to quit. Over the two years that I cared for him, he tried at least a dozen times. But his already challenging task was made even more difficult by his isolation. Eddie lived alone, estranged from his family, with friends and co-workers who grew increasingly unsympathetic to his plight. "They don't understand why I keep smoking if I keep losing fingers," he said to me one afternoon. "They just don't understand how hard it is for me." Moreover, because his disease was so rare, he had no community of fellow patients to turn to in his town or at our hospital.
But his visits to the clinic always seemed to cheer him up. He responded, it seemed, to my encouragement, and each time he left, he renewed his vow to quit smoking. But weeks would pass and his enthusiasm would wane. If I contacted him by phone, his momentum might continue another few days, but finding a mutually convenient, quiet moment to talk on a regular basis was exceedingly difficult. I tried scheduling frequent follow-up appointments, but Eddie lived over an hour away from our hospital and could not afford to keep missing work.
Eventually, Eddie lost another two fingers, the front half of his left foot and his entire right foot. The youngest man in my waiting room soon became confined to a wheelchair. At the end of our last visit, I stood in the clinic hall watching him inch away from me in that chair, pushing off the ground with the remaining stump of his left foot and grasping at the wheels with hands that had become mitts.
I thought about Eddie and other patients I have cared for who might have benefited from more frequent contact when I spoke with my colleague about social media and the patient-doctor relationship. I wondered if Eddie would have felt a little less isolated and perhaps been able to quit smoking if I had, for example, texted a word of encouragement to him every few days, interacted through blog comments, or directed him to an online community of people who were dealing with the exact same disease.
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